Might be time to get added to transplant list.

[skuch65]

Talk to my Nephrologist on Friday and he mentioned to me it maybe time to add me to the transplant list in the near future.  What is the process for this?  My last labs,which were 3 months ago, had my creatinine at 3.5,GFR at 20.  I had more labs done yesterday no results til Tues.  How does a Dr figure out when it is time to be put on a list?  I hate having bad kidneys its always on my mind.  Thanks for any help.

[paris]

The three centers I have worked with started the process when I was at  20%.  I was told the testing would take 2-3 months.  Mine took more like 7-8 months. It all has to do with scheduling at the transplant center.  Tests include ekg, stress test, chest xrays, ultrasounds, tons of blood work, dental checkup, meetings with co-ordinators, finance co-ordinators, surgeons----I know I am forgetting something.   None of it was bad; just took time to get them all done.   Good luck.   My neph contacted one center and they sent me a packet that started the whole process.    Keep us posted on what happens.

[TynyWonder]

I read somewhere and I can't remember where it was but do they do a psychological evaluation?

[MIbarra]

They do, but it is not bad. Just don't tell them you see dead people or anything.. just kidding...

I think mostly they are trying to evaluate if you will stick to your treatment and meds post transplant and are emotionally ready to accept a trasnplant.

[Chris]

Meet and greet with Social Worker also
 Depending on your area, check out each transplant center and go to their transplant seminars if they have them.. They discuss information about the transplant process, meds, and other things. At least the 3 centers I went to in my area did. The fourth, well I didn't think to highly of them with no information to look over, no slide presentation, and we're suppose to know already what questions we were going to ask.

[RichardMEL]

And you know I've had next to none of these tests! I've done some EKG's and had obviously all the labs done (and updated) and they take transplant bloods (for matching) every 2 months. I saw a social worker for the psych thing but that was when I went in with my sister who was trying to donate - so strictly not related to me receiving a kidney(I was already on the list at this time). I queried the co-ordinator about this and she pretty casual about it - just saying I was in good health apart from the CKD and a fine candidate for transplant. I guess they do things differently down here. However I asked and they confirmed I am on the list (and they take the bloods etc) and seemed happy enough that I am in good shape to receive (I even had another senior doc say the same thing a few months back) so... well I just want the call even though it feels a bit strange not having done a LOT of tests overtly.

[kellyt]

My evaluation would have been completed in about two months had I not had to have a dental procedure done and my dental insurance was "maxed" for 2007 so I had to wait until January 2008.  I think I started my evaluation in Oct. 2007 and literally would have been done in late November or early December if it had not been for the dental procedure.  They waited until last to do my cardiac evlaluation.  I was placed on "the list" on Feb 13th of this year.

If you are over 45 (male) I think you will have to do a colonoscopy.  My testing was super easy, but just time consuming.  Good Luck!

[Joe Paul]

  How does a Dr figure out when it is time to be put on a list? 

The Doctor usually waits to see how compliant you will be. Taking medicine, showing up for treatments or fluid gains are a few examples.

[peleroja]

From my UCLA checklist: labs, EKG, mammogram & pap smear for women, stress test, chest x-ray, colonoscopy, abdominal ultrasound, PPD skin test, hepatitis C consult, pneumovax, hepatitis B, and social evaluation.  No dental exam, but maybe that comes later.  I have heard that if there is a choice between a PD patient and a hemo patient for a perfect match kidney, they will choose the PD patient as they have been shown to be more compliant because they do it all themselves.  In my case, they sent the info to UCLA which responded that they wanted me to have a 9 month regimen of "something" because years ago my TB skin test showed positive.  Doesn't mean I have TB, just that I've been exposed to it.  Also my abdominal ultrasound revealed cirrhotic transformation of the liver, so I have to have a GI consult.  So testing could take 2-3 months or 2-3 years, depending on what further tests your transfer center keeps asking to be done.

[TynyWonder]

So peleroja

Are you on the list now or are you still in the process of finding out if you can be put on the list?

[paris]

They do tend to add more tests as time goes on.   I have never heard a PD patient would receive a kidney over a hemo patient if they both were a perfect match.  Interesting.   Second center added TB test and HepB vaccine series to their list.  Each center is a little different.    Dental is a must because of chance of infection. All three centers needed that one done.     You kind of learn what to say and how to be the most "compliant" patient they have ever seen!   None of the tests are hard and they keep assuring you they are looking out for your interest.  Keep us posted

[peleroja]

So peleroja

Are you on the list now or are you still in the process of finding out if you can be put on the list?

Nope, not on list.  I have my GI consult on 9/3, and I will see my neph on 9/12 and find out what's going on with the 9 month regimen. 

[pelagia]

Stephen had almost all of his workup done in the hospital in a single day.  It included bloodwork, ekg, elctrocardiogram, mri, and psych eval.  He had already has his "I am over 50" colonoscopy.  Not sure what they did for the blood tests. He has regular dental exams, so nothing extra. All of that was done during the summer of 2007.  He was cleared for a transplant as soon as the test results were in, but they would not officially list him until his kidneys were out.  There was some concern about the kidneys interfering with the success of the transplant because they were so large. (I felt they were interfering significantly with his breathing.)  Friends and family were tested during the fall and a final donor candidate was identified by late November.  The donor came to Virginia for testing in January, with the delay being due to the holidays.  In early 2008 Stephen was approaching 10% kidney function.  He had his kidneys taken out in March.  The transplant took place in May, after he was on dialysis for 7 weeks and had healed from the nephrectomies. 

[kellyt]

You know, when I had my evaluation to be placed on "the list" they had me running to multiple different doctor's offices, hospitals, labs, etc. all over the city.  When my donors tested to give me a kidney they were admitted for 48 to one hospital and they were done. 

[pelagia]

When Stephen's donor came down from NY for the testing they put him up in an apartment near the hospital that they own.  And then he was able to stay there after he donated, but before they would let him go back to NY.